Advice please

[Sank28]

Has anyone had a heart and lung transplant and could tell me how your getting on?

What is the life expectancy for this sort of transplant?

I’ve been told I need one and will be priority. Very scared and was expecting this so soon.

I am thinking what if I don’t have the transplant and the doctors are wrong and live to old age with my condition.

[MichaelJH Heart Star]

There is a support group called Harefield Hamsters for patients and their families. You can check it out here harefieldhamsters.org

[MichaelJH Heart Star in reply to MichaelJH]

I have just had a look through the website (I saw information about the group at an outpatient's appointment and your post reminded me of it). There was one person celebrating 35 years and five 34 years in 2018. With continued advances in treatment and medication I imagine 50+ years could be down the road!

[Rosei]

I only know of one, my friends' son had one just about a year ago, he has Cystic Fibrosis,, James has recovered well, this transplant took place in Newcastle. Within 6 months he was back at work, dry stone walling, he always wanted to work outside.. Of course James has other problems associated with CF so he has done very well. James had counselling before the op, hope this helps a tiny bit.

[Fortepiano]

I can understand your anxiety about undergoing a heart/ lung transplant. My husband had a heart transplant 6 years ago, and we found it a very frightening and overwhelming prospect. It was only later we realised how few of the many people whose lives could be lengthened by a transplant actually have one, and how lucky he was to be listed.

We were also aware that people are only listed for transplant as a last resort, when the surgery is unfortunately their only chance. We are hugely grateful to his hospital and donor family and to everyone who joins the organ donor registry.

The referral process is very thorough and the transplant hospitals are extremely experienced - you can trust their judgement.

Obviously there is an element of luck involved with how people do after transplant, and there are setbacks and complications to deal with. Living healthily, being careful about infection, always taking the drugs and following the transplant doctors' advice will help to give you the best chance. My husband has just come back from his routine 6 monthly hospital visit, where he met a chap who had his heart and lung transplant 27 years ago. I don't know how long my husband will live, but even 1 year after surgery he said that if that extra year was all he got it would have been worth it - his quality of life was so much better. The key is to embrace and make the most of whatever good times you are given, and my husband's transplant has not just saved but has transformed his life. I hope yours does too.

(By the way, to everyone who thinks their spare parts are too old / in not good enough condition to donate, there is always something which can be used to help others e.g. corneas, kidneys and livers have all been successfully donated by people in their 80s.)